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Customer Discussions > Fibromyalgia forum

Low Dose Naltrexone - LDN - for Fibromyalgia


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Showing 1-25 of 202 posts in this discussion
Initial post: Apr 29, 2009, 7:18:00 PM PDT
I am an RN and Information Scientist who researches novel adjuvant cancer therapies and i had fibromyalgia. I say HAD because i no longer have fibromyalgia pain. I was in horrible pain for 8 years prior to that. I initially learned about LDN as a novel adjuvant for cancer - but soon learned it was also being used for fibromyalgia. I have been on Low Dose Naltrexone (also called LDN) for over a year now and the results have been nothing short of miraculous. It is an old, off-patent drug that is compounded and used in dosages less than a 1/10th of the original dosage. As such it functions as an immunomodulator. That is, if one's immune system is hyperactive as with autoimmune diseases like SLE and MS it brings it down to normal; and if one's immune system is hypoactive as with cancer and HIV it brings it up to normal. LDN is currently being being studied for fibromyalgia at Stanford; but only after getting funding from the Fibromyalgia Society since drug companies were not interested (in fact they are not interested in it for cancer or MS or any other indication) - it is an old off patent drug which one can buy for almost nothing. (I get 3 months worth from a compounding pharmacy in Colorado -Belmar Pharmacy - for about $40). From the research i had done prior to taking it most reported it took several months for it to work in the case of fibromyalgia (much faster results with MS). Sure enough it did not work for me initially, but knowing what to expect i continued it and after 2 months i became painfree! It had been so long since i had been pain free i had almost forgotten what that was like. I hope everyone with fibromyalgia looks into LDN. In fact if you know anyone with Cancer, SLE, Crohns disease, MS, HIV etc... please let them know about LDN. There are many videos on Youtube about LDN also. Just type LDN or low dose naltrexone in the search box.

www.lowdosenaltrexone.org
http://snapl.stanford.edu/ldn/
http://snapl.stanford.edu/research/ldn.html

Posted on May 4, 2009, 4:53:05 AM PDT
K. Chavis says:
Dear Linda, I will share this with my PCP. I am going to have surgery on June 16th. All the physicians involved want me to hold off on any new meds. In fact, I have been weening off of some.

Thank you,
Karen

In reply to an earlier post on May 4, 2009, 5:11:34 AM PDT
Hello Linda do you need a doctors precription for this drug?

In reply to an earlier post on May 4, 2009, 5:31:05 AM PDT
Last edited by the author on May 4, 2009, 5:34:16 AM PDT
Yes it is a prescription drug. It must be compounded by a compounding pharmacy. I used Belmar Pharmacy in Colorado. They compound alot of it and do it correctly. Plus they are cheaper than some. (3 months for about $40 by mail). If you cant' get an Rx from your doctor you can do a phone consult with several doctors who are LDN advocates. I recommend Dr Jeffery Dach (google him and "LDN"). He was a protege of Dr Bihari the inventor of LDN. Many people also buy their LDN w/o an Rx from India (www.alldaychemist.com is a reputable one in New Dehli) - then you mix one 50 mg tab with 50cc distilled water and take 4.5 cc of it (which = 4.5 mg when mixed this way) every nite. I did this initially until i could get an Rx from a doctor.

LDN has basically NO side effects... RARE people can have bad dreams for a WEEK. A small price to pay for the benefits and even then this is a RARE occurance. You can't take it WITH narcotics since LDN is a narcotics antagonist...they cancel each other out. So if you take Ultram/Tramadol or any narcotic you have to be OFF of it first.

Ciao
Linda

Posted on May 4, 2009, 7:36:56 AM PDT
Hello again Linda ...Thank you for your reply I started Savella this is my 5th day so I guess I need to give this a try and beings you can not try them together I really need to give this drug a chance but I will be watching this thread closely in case I am unable to take the Savella. But your info is very interesting to me, so again thank you for posting about it.

Debbie

Posted on May 4, 2009, 12:10:48 PM PDT
I second the recommendation for LDN. It's also very good for autoimmune and other immune system related disorders. I don't have fibro but CFS/ME, a related illness, which in my case was progressive. I've been taking LDN since March 2007 and have had no further illness progression. My symptoms are also greatly reduced. There are many other effective medications for fibromyalgia (my book "Reviving the Broken Marionette: Treatments for CFS/ME and Fibromyalgia features over 250 of them!) but LDN probably has the best safety/efficacy profile of them all.

Interestingly LDN is also in clinical trials for juvenile (children's) fibromyalgia. Hopefully the results will be good (I'm sure they will be), as there are very few studies done on fibromyalgia in children.

Debbie: You can take LDN with Savella (in case Savella helps you, but doesn't help you enough), though of course you should not start taking it yet, so that you'll know whether it works or not.

In reply to an earlier post on May 4, 2009, 12:57:20 PM PDT
Great! Good luck. And remember if you have close-minded doctors who are unwilling to Rx LDN for you you can always call Dr Jeffrey Dach for a phone consult and Rx. There is really no good reason not to Rx LDN other than closemindedness! It has no contraindications and causes no side effects other than the rare individual with very short-term bad dreams. The only reason not to be on LDN is if one is on narcotics. Even then taking LDN with narcotics will not harm you - its just a total waste because the LDN will not work because the receptors are loaded with narcotics - so you have to go off narcotics before starting on LDN. Stories about closeminded doctors throwing the information in the trash and/or refusing to Rx LDN are legion - this especially seems to be true with MS patients i've read. So don't give up if you can't get your doctor to Rx it for you. Sometimes one has to be their own patient advocate and be proactive by searching for another doctor who is openminded and willing to prescribe it. Don't give up! :) There is a world beyond misery...i can testify to that!

In reply to an earlier post on May 4, 2009, 4:08:33 PM PDT
Please tune into The Mary Bradley Show .. tomorrow at 1PM (NY Time) I will be interviewing Dr David Gluck and his thoughts on Low Dose Naltrexone (LDN)

http://www.blogtalkradio.com/mary-boyle-bradley

Posted on May 13, 2009, 6:50:30 AM PDT
Beccie says:
Can you please tell me more about this medications?

Posted on May 13, 2009, 7:06:05 AM PDT
Beccie says:
Hi, It's me, Beccie, I had one of those fibro moments where I lost everything. So I will rewrite what I tried to before. I have suffered from fibro and cf for more than 30 years and just got diagnosed 6 years ago after breaking apart and checking with 30 or more doctors. I actually got diability because of that and a couple of other things. I take opana for my pain which is an opiate. It works quite well. However from what I am reading here I may have to go off of this to go on LDN. Is that right? I am in a flare now of no sleep, and racing around the house for hours doing jobs. I am on several other drugs as well. Valium, cymbalta, seroguel, nexium and nurontin. That list has been cut down in half since I started this journey. Do you know if LDN causes any signs of constipation as I have IBS-constipation as well. It really is nice to have a site to go to where there are other sufferers to share info. Thank you all for taking the time to inform all of us. I will be looking for a reply. Please send a copy of your response to faithdream@triad.rr.com as I am using my wife's site to get on this page. Thank you, Beccie

In reply to an earlier post on May 13, 2009, 3:07:09 PM PDT
Last edited by the author on May 15, 2009, 11:00:01 AM PDT
Hello,
Please see my previous posts and URL's i posted and do some studying. Also chk out this site:
http://jeffreydach.com/2007/08/01/low-dose-nalotrexone-ldn-by-jeffrey-dach-md.aspx
You can get an RX from Dr Dach via phone consult if you cant find a local Dr to work with you.
Edit:
Sorry i posted this then realized i didnt answer your question about going off opiates to be on LDN. When i tried to post again it wouldn't let me. Only today did i see that one can "edit" a post.
The answer is as Maija has posted. Yes you have to be off opiates to take LDN. You also have to be off of Ultram/Tramadol even though its not exactly an opiate in the conventional sense. I'm glad to read you're getting relief from Opana. Sorry you'll hv to check back here for my replies as i don't give out my email address.

Posted on May 15, 2009, 12:21:25 AM PDT
Yes, you'd need to go off the Opana to try the LDN. The other drugs would not be a problem, though you'd likely be able to go off some of them with the LDN.

Here's an article about the recent study of LDN for fibromyalgia: http://www.medpagetoday.com/Rheumatology/Fibromyalgia/13785

In reply to an earlier post on May 15, 2009, 7:07:27 AM PDT
Beccie says:
Thank you Maija, I just needed someone to confirm what I had read. Right now I'm not sure I'm ready to go off the Opana. For more than 4 years I layed on the couch watching tv We moved from PA to NC and I haven't stopped moving my body since. I got the prescription from my family doctors nurse practitioner. What a joyous relief. Yes I work frantically, because of the obsessive issues, and yes I do have to go down for a couple of days, but I am able to make my house a home for my wife and I. I have been blessed by the relief the Opana has given me. I would recommend this drug for anyone that does not mind being on an opioid for relief. Thanks again for your response. Beccie

In reply to an earlier post on May 26, 2009, 6:52:09 AM PDT
H. Marchman says:
I started taking LDN last week. Should it help with the fatigue as well as the pain? So far I feel just the same.

In reply to an earlier post on May 26, 2009, 6:53:58 AM PDT
H. Marchman says:
Also, I'm using the LDN cream. Is it better or the capsules?

Posted on May 26, 2009, 7:46:31 AM PDT
It should definitely help with fatigue, but it varies widely how soon people notice the effects. I noticed less fatigue already the next day (I don't have fibro, but CFS/ME which is somewhat similar) and so do some people with MS, but for most people with MS and CFS/ME it takes several weeks to notice the effects. I assume it's similar in fibro.

Why were you prescribed LDN as a cream? The capsules (or liquid solution) are definitely preferred and the transdermal cream should only be used for those who cannot take capsules or liquid, as with a cream the absorption may not be quick enough for the "peak" needed for the LDN protocol to work optimally.

In reply to an earlier post on May 26, 2009, 11:36:25 AM PDT
H. Marchman says:
My RA said his patients had better results with the cream. At the compounding pharmacy where I got it, they only have capsules or cream. I thought the cream might be better to see how I would do, because I'm very sensitive to medications and you can't cut a capsule in half. The capsules were a lot cheaper though. I wonder if I am taking enough. I'm taking .5 ml a day(supposed to be taking 1 ml), and rubbing it on the insides of my arms. It didn't say where to put the cream. The first day I took it I felt like I could run a marathon ( and I haven't felt like that in a year and a half). After that day, I just have felt my normal fatigue where I take several naps a day, but I do feel less achey. I just want to have some energy again so I can have a normal full time job.

Posted on May 27, 2009, 10:39:35 PM PDT
Have you had any side effects? You don't mention any. If not, you could increase the dose to the recommended 1 ml. It is still well possible it will help you with fatigue. When a friend of mine started taking LDN for her CFS/ME it helped her chronic fever almost immediately, but it took several weeks before her fatigue and muscle weakness started to lift.

Commonly when LDN is prescribed, people start with lower strength capsules. Like I was prescribed 1.5 mg capsules and I took two for the first week and after that three (4.5 mg which is the most common LDN dose). Some start out with just one. On the other hand, many people (even those who are sensitive to medications) start out with the full dose without any problems. In the fibro study LDN was better tolerated than placebo.

In reply to an earlier post on May 30, 2009, 4:23:16 AM PDT
H. Marchman says:
My friend just got prescribed LDN and was told to take it between 9 and midnight. Why is that and when do you take it? Also, is LDN something that will make our symptoms better permanently or is something we will be on all our lives? And I'm definetily going to talk to my PA about switching me to capsules. They are about $40 for a month supply of 1.5 mg. I see someone got a 3 month supply for that much, that sounds much better.
And thanks Maija for all your feedback. It really helps!!!
Holly

In reply to an earlier post on May 30, 2009, 4:39:30 AM PDT
Check out Belmar Pharmacy (google it and low LDN) - they compound it correctly and i get 3 months for about 45$ including shipping!~

Posted on May 30, 2009, 6:35:03 AM PDT
It has been recommended to take LDN between 9 PM and midnight (or 2/3 AM) because the production of endorphins is the greatest between 2 and 5 AM or so. Some doctors say you can also take LDN in the morning if it causes sleep disturbances, others say you can't, but apparently some people do take it successfully in the morning.

Some have also disputed the maximum endorphin secretion during the night claim, but I know from experience that since I've been on LDN, if I'm still awake at 2 AM I get a sudden itch that quickly goes away (I used to suffer from chronic urticaria (hives), but with LDN it has almost completely gone away). Endogenous opioids can cause itching... Also, in my experience I don't seem to feel as well the very next day if I take LDN very late, like after 1 AM, but it could be just coincidental. Usually I take it at about 11 PM.

LDN won't cure anyone, or at least that's unlikely. However, I don't like people saying that any medication is for life, because medical science is advancing at such a rapid rate that most likely just about all illnesses will have a cure in 10, at most 15 years. So if you are not very old, most likely you will not be taking LDN forever, even if it helps you.

I pay about 15 euros a month for my LDN, which I buy 100 4.5 mg capsules at once.

Posted on Jun 5, 2009, 7:37:03 AM PDT
Hello all, I took my first dose of LDN last night my doctor from Dallas (Fibromyalgia and Fatige Clinic) called it into ITC Compounding Pharmacy out of Colorado. It is a 4.5mg capsule. I wish he had started me out on a lower dose and built me up to this dose beings I am sensitive to medications but I forgot to suggest that and this is what he called me in.

I've had a series of events take place with medications that has me all so confused to what to do. First of all I was on a T4-60mc/T3-100mc and was doing fine on it then I saw my doctor in Dallas he started me out on a 2-week titration Pack of Savella and called in a rx to change my hormone cream up a little. Mean while I did not know he was calling my husband in his testosterone cream (that had always been injectable before.) They were both delivered by mail at the same time in packages looking the same as my hormone cream, thinking both was mine I started using what I thought was my new dose of hormone cream. Started having high pulse rates to up over 100....thinking it was the Sevella beings it was the only new rx I had started all along was using my husbands cream.

Back to LDN ...LOL I have been pulled away from trying to type this so many times I hope this is all making some sense. My sleep was not a sound sleep last night it was like weird thoughts kept going back and fourth in my head and seemed like I was never even really ever asleep. I am hoping this will pass in time. I probably should of never started this medication until I got stright on all my terrible mix up and my anxiety and high pulse rate came back down. I hope I made all this clear enough to understand.

In reply to an earlier post on Jun 5, 2009, 9:14:19 AM PDT
Hi Deb
Bad dreams for about a wk is a rare side effect (the only one really) from LDN that folks can have. As i said it passes in about a wk and is well worth it in my opinion. Most people don't have any side effects at all. So hang in there. Also it was once thought that LDN had to be taken from 10p-2pm. Now the information is out that you dont HAVE TO take it then... in fact you can take it in the morning when you wake up. This is a good time to take it if you are one of the rare ones who has nightmares or sleep disturbances from it.

Good luck!

In reply to an earlier post on Jun 5, 2009, 2:56:32 PM PDT
H. Marchman says:
Debbie,
I have been on LDN for about 2 weeks. Had acouple of headaches at the beginning an that's all. I'm on the lotion rather than the pill so I can adjust the dosage(i'm taking 1.5mg and it seems to be helping quite a bit). I'm also very sensitive to meds. I take mine in the morning and it isn't messing with my sleep. That sounds awful-the med mix up. I hope you are doing better.
Holly

Posted on Jun 6, 2009, 4:08:15 PM PDT
Linda and Holly,
Thank you both for your replies I forgot and took it last night before bed and still has some sleep disturbance but maybe not as bad as the night before....I did get up this morning and felt bad but as the morning went on I started feeling better still having the high anxiety hoping this will pass as I stopped alot of my normal medication for a few days to let everything back to normal. If then I am still having same anxiouty problem with high pulse I will have it checked out.

I really do not see that big of a problem woth my 4.5 mg dose of LDN so far so I think I am going to tolerate it better than anything else they have tried me on. Now what will I expect to see in how I feel. I need more energy and less over all pain it seems I have more problems with my energy level than anything.

I hope everyone is doing well and I will keep you posted and please keep me posted on your results and what to be looking for.

Good Evening
Debbie
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